Tag Archives: Advocacy

Joint Campaigns Meeting with Haemophilia Scotland and the Scottish Infected Blood Forum (SIBF)

Joint_Members_Meeting-960x750_edited

On October 14, between 11am-1pm, Haemophilia Scotland and the Scottish Infected Blood Forum are jointly hosting a campaign meeting in Glasgow for anyone interested in the contaminated blood and blood products disaster in Scotland.

This will be a chance for people to come together in Scotland and discuss issues ranging from their experience of the new Scottish Infected Blood Support Scheme and how it can be improved.

The venue, Mercure Glasgow City Hotel, is located near George Square in the city centre and is accessible by train, bus or car. For more details see:https://www.mercureglasgow.co.uk/

Register now to secure your space.

World Hepatitis Summit – Glasgow SECC – #hepatitis2015

Shona Robison 001

Experts, officials, Government Ministers and patients from across the world gathered this week at the SECC in Glasgow last week to attend the first global summit on hepatitis. It was sponsored and organised by Scottish Government, the World Health Organisation, the World Hepatitis Alliance, Glasgow Caledonian University and Health Protection Scotland. Haemophilia Scotland was represented by our chair Bill Wright.

Opening the Summit, Scotland’s Health Minister referred to the infection of people with haemophilia and others with hepatitis C via NHS blood products and stated “we remain absolutely committed to those affected by that tragedy”.

This is a historic photo. It is Bill's first attempt at a selfie!  He's happy for you to judge for yourself his talent – or lack of it.

This is a historic photo. It is Bill’s first attempt at a selfie! He’s happy for you to judge for yourself his talent – or lack of it.

Scotland received widespread plaudits for the way in which it led the world in making available the expensive new treatments available to those infected with hepatitis C. Shona Robison set out the lessons that Scotland had learned about what needed to be done in reaching this world leading position. Firstly, the accumulation of robust data. Second, a clear structured national plan. Third, the involvement of patients and accountability.

With significant numbers of those infected by blood products in Scotland responding well to the new treatments, the position has clearly altered dramatically for the better in the last few months, albeit many will sadly also be left with irreversible fibrosis and cirrhosis.

The SECC is going to be the venue for the World Federation of Hemophilia Congress in 2018.  It’s a great venue and we are looking forward to our friends from round the world seeing it and enjoying all that Glasgow, and Scotland has to offer.

Contaminated Blood Financial Review Group Consultation Meetings announced – SHORT NOTICE

Consultation

As you may know, Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport has set up a Financial Support Review Group to look at how the Scottish Government can best provide financial support to people affected by the Scottish Contaminated Blood Disaster.  You can read the note of the first meeting on our website.

At the July meeting it was agreed that the Group needed to urgently hear from as many of the people who are directly affected as possible.  In particular, to find out about what the principals behind any financial arrangement should be and what mechanisms would be most appropriate.  Time is very short as the Group wanted to have the early results from any consultation in time for the September meeting and to make sure that the was no delay in making a recommendation.

There will several ways of getting your views to the group.  You can choice to use any or all of them.

  1. A questionnaire.  This will be circulated asking for your views.  Although there will be set questions there will also be a lot of free text boxes so you can say exactly what you think.  You will be able to complete the survey online or in hard copy.
  2. Regional Meetings. There will be meetings in Edinburgh, Inverness, Dundee, Glasgow, and Aberdeen.  See below for the details.  This is so that people who don’t want to do the questionnaire, or have questions, or who just want to talk through the issues, can take part.  All the meetings will start at 6pm.  You can attend any of the meetings.
  3. One to one conversations. If you’d prefer just to talk to someone then that can be arranged to. In the first instance please contact Dan in the office.

A formal letter from Ian Welsh, who is the independent Chair of the Group, is about to be sent out with the questionnaire and explaining things in more detail.  However, because the first of the consultation meetings is only next week, we wanted to start promoting them straight away.  We are sorry we haven’t been able to give you more notice of the meetings.  However, everyone on the Group is conscious that there are many people whose financial situation means that this process is extremely urgent and has to be taken forward as quickly as possible.  We are determined to work with you to make sure everyone’s views are collected.

REGIONAL MEETINGS

Edinburgh – Wed 19th August
Premier Inn Edinburgh Park
Lomond Room
1 Lochside Court
Edinburgh
EH12 9FX

There is free parking and the hotel is right next to Edinburgh Park Station and Tram Stop. It is also on the 2, 20, or 63 bus route.
Outside the city centre because of the Festival and Fringe.

Inverness – Mon, 24th August
The Place Hotel
The Ness Suite
8 Ness Walk
Inverness
Inverness-shire
IV3 5NG

Free Parking and on the ground floor.

Dundee Tues, 25th August
The Apex Hotel
Melbourne Room,
1 West Victoria Dock Road
Dundee
DD1 3JP

Free Parking and lift access to the room.

Glasgow Wed 26th August
The Central Hotel
The Clyde Suite
99 Gordon Street
Glasgow
G1 3SF

In Glasgow Central Station. There is an arrangement to validate a day parking ticket from the St Oswald Street NCP Car Park making it £5.

Aberdeen Thu 27th August
Juries Inn
Glen Grant Room
Union Square
Guild Street
Aberdeen
AB11 5RG

By Aberdeen Station and the Union Square shopping centre.

Scottish Review of Financial Support Schemes meets for the first time

Financial Support Review Group

As part of the Scottish Government’s response to the Penrose Report, a group has been established to review the current financial support arrangements for people affected by the contaminated blood disaster.

The Scottish Review of Financial Support Schemes will produce advice for Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport, before the end of the year.  This is the mechanism that the Scottish Government are using to fulfil their commitment to take part in a UK wide review of financial support and to take moral responsibility for supporting those affected.

Because of urgent need for more support, the first meeting was arranged before a Chair had been found and was held on 11 June.  To get things moving Shona Robison agreed to chair the first meeting herself.  She is now handing over to Ian Welsh of the Health and Social Care Alliance who has agreed to Chair the process.

Some of the key decision from the first meeting were to,

  • accept the appointment of Ian Welsh as Chair.
  • accept the draft Terms of Reference and to incorporate the details of an alternative Terms of Reference produced by the Scottish Infected Blood Forum (SIBF) into the work plan.  Further consultation with the group will take place.
  • agree to consultation with the community to be carried out throughout the process.  Ideas about how this can best be achieved to be fed into Dan Farthing-Sykes of Haemophilia Scotland to be brought back to the next meeting.
  • agree to model the costs of several different potential approaches.
  • agreed to maintain confidentiality during the discussions but that a short factual note would be prepared after every meeting that could be shared with the wider community.
    Read the note of the first meeting in full.
  • request more detailed statistics on how many people were accessing the current support arrangements in Scotland.
  • agree to examine the cross-border issues if a Scottish scheme was part of any recommendation to the Cabinet Secretary.

There was also a discussion about interim / transitional payments following the announcements of £25 million by David Cameron. The intention seemed to be to channel this money through the Skipton Fund or Caxton Foundation to patients and families, but this was still not clear.

The Cabinet Secretary said that her intention was that,

Scotland will match any transitional payments – Scottish beneficiaries would not be disadvantaged.

Cross Party Group on Rare Diseases AGM and Penrose Report Briefing

Cross Party Group on Rare Diseases - June 2015

Cross Party Group on Rare Diseases – June 2015

Yesterday, the Cross Party Group on Rare Diseases held it’s AGM.  The Cross Party Group provides a chance for MSPs to hear from patient organisations and representatives of the Scottish Government about issues affecting people with rare diseases in Scotland.  Bob Doris MSP (SNP) and Malcolm Chisholm MSP (Lab) were re-elected as Co-chairs and Natalie Frankish from the Genetic Alliance was asked to continue as the secretariat.

At this meeting we heard that the Scottish Government has doubled the size of the New Medicines Fund from £40 million to £80 million.  This money is specifically to improve access to treatments for people with rare or end-of-life conditions.

We also heard about the work of the Scottish Medicines Consortium Patient Involvement Network.  Mentors have already been put in place to help patient groups with their submissions.  This is something Haemophlia Scotland may use as we continue to make submissions in support of the new Direct Acting Antiviral treatments for Hepatitis C.

We also discussed the vital importance of Specialist Nurses in Rare Diseases.  We reported on the huge impact specialist nursing has for people with bleeding disorders.  Concerns were raised about how a new fund for specialist nursing would be administered through the regional trusts.

Dan on his way into the meeting.

Dan on his way into the meeting.

The final item on the agenda was a report from Dan Farthing-Sykes from Haemophilia Scotland. This was perhaps the most emotionally charged part of the meeting.  Many of the conditions represented on the Group can be compared directly with Haemophilia before the introduction of clotting factor concentrates.  It was all too easy for people to imagine what it would be like to be offered a life changing treatment only to discover later that it had come at a terrible cost. Dan reported the number of infections and deaths and gave some idea of the impact of the disaster.  He outlined how the need to campaign for decades had been an extra burden on the community.

In relation to the Inquiry itself Dan discussed the time and cost of the Inquiry as well as the disappointment many people felt about not being able to give evidence.  He also highlighted just some of the powerful evidence that was confirmed by the Report.  For example that,

  • Prisoners and Injecting drug users were not prevented from giving blood early enough.
  • People were not told they had been infected – even in the cases of married people with HIV.
  • 1 in 4 children treated for a bleeding disorder at Yorkhill were infected with HIV.
  • In 1983 Government told some potential blood donors that AIDS was “almost certainly” transmitted by blood and blood products but was still reassuring people with bleeding disorders that there was “no conclusive evidence”.
  • When English fractionators produced a Hepatitis C safe product it was not routinely made available to previously untreated people in Scotland – even though the Scottish product was known to be 100% infective for Hepatitis C.
  • Surrogate testing was never introduced for blood donors and the introduction of Hepatitis C testing was delayed in Scotland to allow it to be introduced at the same time as the rest of the UK..

He talked about why so many people have described the report as a whitewash.  The lack of a strong condemnation of the disaster, that individuals were not held to account, and that no recommendations about learning lessons for the future were made, have all contributed to the sense of betrayal of those affected.

He finished by highlighting what Haemophilia Scotland, and others, have called for and what had happened so far in response.  In particular,

  • The Scottish Government apology, accepting moral responsibility, has been important to many people..
  • A Financial Support Review Group is being established to advise the Scottish Government on how financial support should be provided.  It is has been agreed that getting people the financial support they need it the top priority.
  • The Scottish Government are committed to conducting to pilot projects to examine the best ways of providing psychosocial support in Scotland with a view to providing a national service.
  • That a Short Life Working Group is being established to implement the Penrose Report Recommendation on look-back.
  • That a new national Haemophilia committee, The National Managed Clinical Network for Inherited Bleeding Disorders, is being established and will give a stronger patient voice in decisions about service delivery.
  • That discussions have begun about a stronger patient voice in decisions about purchasing clotting factor products.
  • That the Health (Tobacco, Nicotine etc. and Care) (Scotland) Bill makes provision to introduce a Duty of Candour which, if well implemented, could help improve transparency.
  • Shona Robisons has made a statement in relation to access to the new Direct Acting Antivirals for Hepatitis C , saying that “it is very important that those who have been affected through he infected blood and blood products are give and opportunity to have those treatments.”

It has been a long fight to get to this point and there is still a long way to go to fully deal with the impact of the contaminated blood disaster in Scotland.

European Hepatitis C Conference provides the latest information

The Irish Haemophilia Society found a very good venue.

The Irish Haemophilia Society found a very good venue.

We are very grateful to the Irish Haemophilia Society for organising a weekend conference in Malahide, near Dublin, to look at Hepatitis and Bleeding Disorders in Europe. There are almost 11,000 people in Europe with a bleeding disorder and Hepatitis C so this is one of the major issue facing the Bleeding Disorders community across the continent.

Read more

David Cameron pledges £25 million at PMQs… again

The Prime Minister, The Rt. Hon David Cameron MP (Con), was asked about his commitment to deal with the contaminated blood issue as a matter of priority by Huw Irranca-Davies MP (Lab) at today’s Prime Ministers’ Questions.

On the day the Penrose Inquiry was published David Cameron said,

No amount of money can ever fully make up for what did happen, but it is vital that we move as soon as possible to improve the way that payments are made to those infected by this blood. I can confirm today that the Government will provide up to £25 million in 2015-16 to support any transitional arrangements to a better payments system. I commit that, if I am Prime Minister in May, we will respond to the findings of this report as a matter of priority.

Hansard

Today’s response seem to mark a change in emphasis from providing support for transitional arrangement to providing help for families.

In today’s answer David Cameron said,

…we’ve made available £25 million to help those families and there will be a full statement, by the Government, before the summer recess, to make sure we deal with this in the best way we possibly can.

Haemophilia Scotland has written to the Prime Minister twice to ask him to clarify how this £25 million will be spent.  We know some of those affected by the disaster in Scotland are facing severe hardship.  If any interim payment is to be made using this money then it needs to be done as a matter of urgency. However, it is clear that £25 million is nowhere near sufficient to fund a fair settlement.

With thanks to Tainted Blood who provided the clip of PMQs on their YouTube channel.

Cab. Sec. Shona Robison meets Haemophilia Scotland

Yesterday (11.03.05) Shona Robison MSP, Cabinet Secretary for Health, Wellbeing, and Sport had her second meeting with Haemophilia Scotland since taking over from Alex Neil MSP.

She has a long track record of involvement in the contaminated blood issue going back to the earliest days of the Scottish Parliament.  For example she raised the Ross Report at First Ministers Questions back in 2003.

At the recent meeting we discussed the importance of listening to our community about how to learn lessons from the Penrose Report, and in reviewing the support arrangements for those affected.  However, that can’t be allowed to cause undue delay before there is a substantive response from the Scottish Government – people have waited long enough.  We also had an assurance that a distinctly Scottish support settlement has not been ruled out.

A lot now rests on what Lord Penrose includes in his report but, in the meantime, it seems that the Scottish Government is committed to an open dialogue with all those affected in Scotland.

Until then, don’t forget to get your local MSPs involved by contacting them about Richard Lyle MSP’s motion on the Penrose Inquiry Final Report.

Your hard work promoting the Penrose Report Motion is paying off

Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

Thank you to everyone who has been contacting their local MSPs and asking them to sign Richard Lyle MSP’s motion S4M-12139 on The Penrose Inquiry Final Report.

Several MSPs have written to us to thank us for raising the issue with them which just goes to show the value in getting in touch with them now.

Six more MSPs have signed the motion today bringing our running total up to 44.  So thank you to John Pentland MSP, Gavin Brown MSP, David Stewart MSP, Ruth Davidson MSP, Paul Martin MSP, and Lewis Macdonald MSP.  However, there is still a long way to go and there are lots of MSPs who haven’t signed.

If you haven’t already done so please take a few minutes to check if all your MSPs have signed and to get in touch with those who haven’t.

It is really important we keep getting strong support from all the parties.

Support by Party

SNP: 17 of 42 (40%)
Scottish Labour: 15 of 38 (39%)
Scottish Conservative: 7 of 15 (47%)
Scottish Lib Dem: 3 of 5 (60%)
Scottish Greens: 0 of 2 (0%)
Independent: 2 of 3 (67%)
No Party Affiliation: 0 of 1 (0%)

*There is a convention that Ministers don’t usually sign motions like this. So, although there are 65 SNP MSPs, we have used the figure for the number of backbench SNP MSPs.

Scottish Medicines Consortium discuss new treatment (Harvoni) for Hep C

Bill Wright trying to attend the SMC meeting on ledipasvir-sofosbuvir (Harvoni)

Bill Wright trying to attend the SMC meeting on ledipasvir-sofosbuvir (Harvoni)

Yesterday, the Scottish Medicines Consortium (SMC) met to discuss a range of newly licensed drugs.  Haemophilia Scotland had been invited along because we made a formal patient submission in support of the new Hepatitis C combined therapy from Gilead Sciences, ledipasvir-sofosbuvir (Harvoni).  There were also submissions from The Hepatitis C Trust and Hepatitis Scotland.  A summary of all three submissions was read to the meeting and highlighted the need for a single pill treatment which avoided the need for interferon.  There were some heart-rending quotes from patients about the horrendous impact of interferon side effects and long term damage.

We won’t know if if the application is successful for a month but we will report the outcome as soon as we know.

It is clear that the all the new treatments coming through at the moment are going to be used differently for different genotypes.  If you don’t know what genotype you are now is a good time to ask your doctor so that you can tell which of the new treatments might be most useful to you.

Bill Wright and Dan Farthing-Sykes attended the meeting although Bill found himself trapped in a stuck lift for 40 minutes with half the other people their to observe the meeting!  Thankfully he was rescued in time to hear the discussion and none the worse for the experience. We hope that this isn’t a omen and that there will be no delays in getting these new treatments to those who desperately need them.

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